Potential coeliac?

[Redcar1992]

Good morning, hopefully someone can help or advise. Sorry if this is long.

I'll start by saying my mum has coeliac disease, if there is even a hint of contamination then she is unwell for days. Diagnosed in early 50s.

I had never really suffered with my stomach until the last 12 months. Started off mild IBS type symptoms. I had a blood test for coeliac last Feb (my hair was falling out- cause unrelated in the end). Test was negative.

For a few months now I have been having heartburn nearly every day, and feel incredibly bloated and uncomfortable after eating or drinking things like beer. I have to sit bolt upright after eating and if i drink beer I feel sick (after 1 not because i have drank too much). I also have a low level feeling of nausea all the time. Then the last 2/3 weeks when I have eaten I have been in really bad pain followed by awful diarrhoea. I put 2 and 2 together after having a roast dinner a couple of days apart (Xmas lol), I used bisto gravy on both and I was in agony.

So I had a think about the times I have felt really in pain or sick and it does seem to correlate with wheat/ gluten. I have known I am intolerant to barley since I was a child (if I drink something with barley in, it makes me wheezy).

The last 4 days I have cut out gluten, and I immediately felt better. Normal bowel movements, no heartburn or nausea. No pain. And so much more energy.

I am aware that in order for it to show up on a test I would have to eat gluten so I am going to reintroduce today but do you think it is advisable I go for a test when I only had one last year? Can only cutting it out for 4 days have such an instant effect or is it all in my head?

Any advice would be helpful. Thank you.

My coeliac test was negative but I went GF anyway due to family history and was better within 2 days so absolutely yes. Been GF for 3 years now and all symptoms gone.

Also forgot to mention I have had an itchy blistering rash which is symmetrical. Could have just been some sort of heat or sweat rash though? Under my breaststroke and down as far as my bellybutton. Cleared up a lot since going gluten free 4 days ago.

*breasts not breaststroke thanks autocorrect

@WhatAFoolishFool I have been thinking of doing this after feeling so much better but I feel a bit.... silly I suppose if I don't have something from the doctor that is concrete iyswim? Also how do you navigate friends and family I'm worried it would be seen as a 'fad' without diagnosis.

Coeliac doesn't always show up on a blood test, you need to have a biopsy test to get a definite diagnosis. It's also possible to have non coeliac gluten intolerance.

Have a look at the Coeliac UK page on diagnosis www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/?&&type=rfst&set=true#cookie-widget

I'd recommend going through the process because if you are coeliac then you are entitled to regular check ups, bone scans (as bone density can be affected) etc.

I’d get tested again as it’s beneficial for many reasons but I have diagnosed myself with NCGS and everybody takes it seriously.

tjere is a rash linked with coeliac. Give it a google.

@sweetpeasandtea will they refer for endoscopy without a positive blood test ?

Depends on your GP - they should refer you to a specialist as you've continued to have symptoms despite the negative blood test - but unfortunately some GPs are better than others. I would definitely go back to the GP and ask for a referral - especially given your family history & ongoing symptoms.

My GP wouldn’t refer me for endoscopy without a positive blood test - despite my also having another autoimmune disease that means I am more prone to coeliac disease. So, I did just go ahead & cut gluten out. I felt immediately much, much better for it. This was about 8yrs ago - I had very young children at the time &just couldn’t face feeling so rubbish, knowing there was something I could do to stop it & not doing it. I do regret it though as I worry without the regular check ups unseen complications will arise in future. But I can’t bear the thought of reintroducing gluten now… I’d push for more tests if I were you.

Also what was the number? Mine was very negative but you could be closer to borderline.

@WhatAFoolishFool I don't think I ever found out the gp surgery just never called me

id get a copy of the results.

I've asked for a copy and picking them up tonight

Lga was 1.4 and ttg <1.9. Which is negative but due to worsening symptoms is it worth being retested?

That’s low, but I’d definitely get re tested anyway, your GP may refuse though so you may have to go private.

@WhatAFoolishFool only just seen this. What do you mean by low ? I don't understand what the results mean really.

OP you might do better to post on autoimmune diseases as Coeliac disease is neither an allergy or an intolerance.

The higher the result the more likely to be coeliac disease

It's a Jejunal biopsy.